My struggle with M.E.
Author Suzanne Power has endured the misery of the debilitating illness M.E., but her story shows sufferers can come out smiling the other sideMy journey with ME was not shared with anyone other than my first husband. I wish it had been. By its nature, the illness is isolating.
At the time I tried to work as a freelance writer, having left my job as my body could not meet the demands of my stressful role interviewing key figures in Irish and international arenas.
One interview which sticks out in my mind was with the actor Matthew Modine for Elle magazine. I remember propping my head to one side and trying to focus. I had a job to do, so I was nice. I hated having to be nice and wanted to acknowledge how bad I felt and stand up and walk out.
The struggle to write was a turning point, and made me take my diagnosis seriously. The piece was all about how Mr Modine had met his wife in a diner where either he was waiting or she was waitressing. Pie makes an entrance. Starters get mentioned. Elle never did commission again.
By then I was plotting my energy levels on a graph, and realised I could get out of bed for one day a week if I took rest seriously. Six days of rest. One day of work.
There is no estimated time of relief for ME, you just have to take all sorts of supplements and see all sorts of practitioners and, sometimes, they hit on something and, sometimes, you get respite, occasionally from one symptom or another but nothing is instant.
What was a day with ME like? I would switch on my laptop and not be able to focus on the screen if the curtains were closed. I would go to open them and notice the sun was far above the ground, and that it was midday.
I would have slept for 15 hours solid. A meeting would be over, and there would be more missed calls on my mobile.
Meanwhile, the muscles in my back and legs would be twitching, and my mouth would be dry and itching. My arms ached, my fingers ached. I wanted to lie down. All the time. Food tasted awful. I tried everything -- a tonic, a fortnight's holiday, cutting out sugar and yeast, eating meat, not eating meat, eating tomatoes, not eating tomatoes, trying this doctor, trying that therapy. Everyone had suggestions.
There had been one Suzanne, the smoker with a taste for wine, the hardworking journalist with an appetite for the world's cuisines, particularly Cadbury's. Then there was the ME Suzanne, the non-smoking, non-drinking sometimes journalist, when she could get the words out. Her diet was devoid of caffeine, sugar, yeast and all other stimulants.
My husband lived with an octogenarian. Our evenings out, if at all, would follow a routine; I would spend eight hours of the day in bed in order to make the early show at the cinema. We would leave the cinema to get something to eat, and after one course, I would go the colour of chalk. I would be tucked up in bed at 9pm.
I would have gladly kissed the feet of any guru or crystal waver who could have given me some answers as to why I was on a go slow. I lost friends, and the first one to go was one of my best. She began by sending me fabulous thoughts on cards and emails. But she slowly began to disappear, and I became angry with her for her occasional entrances. She would arrive and dump flowers or a book or two.
The worst thing about being diagnosed with ME in 1998 is that I didn't know what was coming next. I didn't know what was happening to me and neither did the doctors, which is why it was so hard to get them to believe me. I questioned everything -- including my sanity. Put bleakly and bluntly -- my body was my enemy.
My physical reprieve in 1999 captures all the exhilaration of renewed energy. But I've learned to say reprieve and not recovery. Recovery is only here now, many years after the debilitating disease took hold.
Recovery has meant a whole change of life for me. In fact, if I hadn't got sick, I would never have left full-time journalism. I would possibly still be in my first marriage, and I would not have written novels. It would never have been the right time. Illness made it the right time.
It has taken an experience as terrible as ME to give me a big fat second chance.
Suzanne's new book Heart Lines is published by Londubh Books, and is priced €12.99